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The Canadian Institutes of Health Research is providing CAD $1.7 million to support Indigenous-led research aimed at improving equity in organ donation and transplantation.

The project will examine gaps in data, access to treatment, and health outcomes among Indigenous communities in British Columbia, Alberta, and Saskatchewan. One goal is to develop a database that captures the lived experiences of Indigenous peoples with organ donation and transplantation.

“We know that 50% of the people in Saskatchewan waiting for a kidney transplant are status First Nations. That doesn’t even include nonstatus First Nations or Métis people. So we know that the rates are very high compared to those of the broader population,” said Caroline Tait, professor in the Faculty of Social Work and Cumming School of Medicine at the University of Calgary in Calgary, speaking with Medscape News Canada. Tait is also Canada Research Chair in Indigenous Health Equity Inclusion.

Barriers to Care

The need for transplantation reflects broader and longstanding inequities in health, Tait said. Colonization has affected the health of First Nations peoples through starvation, residential school policies, poverty, and water and housing insecurity. These factors have contributed to higher rates of kidney disease and related comorbidities than are seen in the broader population.

Geography also creates barriers. Patients with chronic or end-stage renal disease, as well as potential donors, may need to travel long distances from remote communities to urban centers for medical appointments, evaluation, and transplantation. Tait described this burden as “the tyranny of geography.”

Delayed treatment, or lack of treatment altogether, increases the likelihood of organ failure and the need for transplantation.

“There are a lot of challenges for people who are disadvantaged because of poverty, geography, socioeconomic resources, and other types of challenges such as family care and childcare. Many people don’t seek a transplant simply because the odds are stacked against them. If we don’t start thinking about this, we’ll begin to see increased morbidity and mortality rates associated with end-stage organ failure,” said Tait.

“The long wait list for transplantation in the First Nations population is partly due to high rates of diabetes and hypertension,” added Veronica McKinney, MD, family physician and director of Northern Medical Services at the University of Saskatchewan in Saskatoon, Saskatchewan.

“We have a great deal of difficulty with food security. It’s hard to manage your diabetes when you can't get proper food, or go for walks when there are animals, like wolves, bears, and feral dogs on the street. [Having to travel for treatment] can be quite an arduous journey, and patients often encounter dismissiveness from their healthcare providers,” explained McKinney. “Sometimes, the first thing people hear is, ‘You haven’t been eating right. You’re not taking care of yourself.’ The assumption is that you’re not interested in your health, and yet they’ve really done all they could. A lot of people have had negative interactions with the healthcare system, so because of their previous experiences, they don’t see a practitioner until things are pretty bad.”

Preventive Measures

Researchers and clinicians involved in the project said improving access will require prevention, education, culturally safer care, and greater attention to patients’ lived experiences.

Jagbir Gill, MD, associate professor of medicine in the Division of Nephrology at the University of British Columbia and medical director of the Kidney Transplant Program at St Paul’s Hospital, both in Vancouver, said limited access to primary and specialty care contributes to the growing burden of type 2 diabetes, a common cause of kidney disease.

“Most importantly, we’re seeing kidney disease occurring at a younger age than in the past,” said Gill.

Improving early detection and follow-up care is essential, he added.

“There are individual patients who have positive outcomes and good relationships with their healthcare team, but on average, we have a major problem in our healthcare system in terms of creating a trusting, safe environment where patients feel well taken care of. We need to do a better job in preventing kidney disease at the primary care level. An example of this is the Kidney Check program in British Columbia that brings mobile screening directly into First Nations communities for early detection and follow-up care. We also use virtual care to introduce the idea of transplantation and talk to people virtually before they make the journey to see us,” Gill continued.

McKinney said the project’s work will include patient education, provider education, advocacy, and navigation support.

“We’re trying to provide more information to patients, and tell the stories of others,” said McKinney. “We’re educating providers but also advocating at governmental levels to ensure they’re aware that we have pathways to overcoming barriers. Sometimes it just takes a navigator to help people know where to go, what to do, and how we can make organ donation and transplantation work for them,” she said.

Tait, McKinney, and Gill reported having no relevant financial relationships.

Evra Taylor is a widely published freelance medical writer and reporter with 20 years’ experience covering a broad range of therapeutic sectors, including family health, cardiology, psychiatry, ophthalmology, and dermatology.